USA: JAX ME/CFS Center and Derya Unutmaz news

In our latest “People in ME/CFS Research” spotlight, I was fortunate to visit Dr. Morris Papernik at his nearby clinic in Connecticut and interview him about his decades of clinical experience with ME/CFS patients. Dr. Papernik has been treating ME/CFS and Fibromyalgia patients for over thirty years, has served on the Chronic Fatigue Syndrome Advisory Committee (CFSAC), and we are very excited about the prospect of collaborating with him soon here at Jackson Labs for the ME/CFS CRC project. Read on to learn more about his background, his methods for diagnosis and treatment, and his opinion of the ME/CFS field.
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https://jaxmecfs.com/2018/06/27/me-cfs-physician-spotlight-morris-papernik-m-d/
 
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We are pleased to present Charmian Proskauer, an ME/CFS advocate and former cell biologist and website manager, in the latest “People in ME/CFS Research” spotlight. Charmian is the President of the Massachusetts CFIDS Association, and has participated in many advocacy initiatives at both the state and federal levels as part of the organization. She is also the Chair of the US Action Working Group, and participates in some of the working groups for Chronic Fatigue Syndrome Advisory Committee (CFSAC). Charmian and a group of patients and advocates from Mass CFIDS visited Derya and me at Jackson Labs several months ago, where they provided us with valuable insight. Keep reading to find out more about how Charmian began advocating for ME/CFS, and some of the latest initiatives she’s involved in.
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Solving the mystery of chronic fatigue syndrome

For decades, no one has known what causes myalgic encephalomyelitis (ME, commonly called ME/CFS). As a result, this debilitating disease has been very difficult to diagnose and even harder to treat. Now a collaborative JAX research center led by Derya Unutmaz, M.D., is diving deep into the biology of ME/CFS patients to find a root cause, which may lie in their own immune systems. If successful, the work will provide patients with clear diagnoses and effective therapies.
 
Worth a read - not much in the way of scientific content, but the good understanding of the impact of the illness and hence the urgent need for a biomarker, as well as the well-founded confidence that this team seem to have, is encouraging.
 
All of the "We found X about MECFS" state this as if there is one such disease. But it seems be in part a diagnosis, including such factors and PEM, and part dead-end file for "stuff we can't diagnose". Thus, I think any assumption that we all have the same disease is ill-founded. It would be nice if so, our situation is much simpler if we all have a single disease or several that are all fingers of one hand. Nature isn't nice, so I'm increasingly betting we don't.
 
Sisyphus said:
All of the "We found X about MECFS" state this as if there is one such disease. But it seems be in part a diagnosis, including such factors and PEM, and part dead-end file for "stuff we can't diagnose". Thus, I think any assumption that we all have the same disease is ill-founded. It would be nice if so, our situation is much simpler if we all have a single disease or several that are all fingers of one hand. Nature isn't nice, so I'm increasingly betting we don't.
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I suspect you may well be right. But I also suspect that if similar situations were looked at throughout history, the discoveries that paved the way for better understanding this, may well have been initially falsely premised on there being a single common illness. So I still see such work as very heartening.
 
Barry said:
I suspect you may well be right. But I also suspect that if similar situations were looked at throughout history, the discoveries that paved the way for better understanding this, may well have been initially falsely premised on there being a single common illness. So I still see such work as very heartening.
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How many other conditions have PEM, where day after is typically worse than day of, with day 3 showing further decline in the full condition? Complication is that there are vague definitions of 'exertion'. For me, attempting to do normal activities without breaks lying flat in a quiet spot is much worse than using a stationary bike for a brief period. The latter is the worst way to simulate PEM I can think of, yet researchers have placed it first.
I agree that however research gets started it's far better than the past 30 years of "oh, you mean it's about those malingering whiners".
 
Dr Chu's paper where she found that people with ME had inflammatory responses to exertion was important. My first sign I have overdone things is a sore throat and swollen glands. This is not what happens in MS or RA where they become fatigued after overexertion.

The CPET findings give a scientific grounding to what we experience but the important point for PEM is that we do not recover the way other illnesses do.

So our PEM goes beyond post exertional fatigue but includes unique characteristics, is often delayed and is prolonged.

That does not seem so very hard to understand, but the medical profession is still hung up on the stupid idea we have an illness of fatigue thanks to CFS, whereas we have a complex multisystem disease.
 
Mithriel said:
Dr Chu's paper where she found that people with ME had inflammatory responses to exertion was important. My first sign I have overdone things is a sore throat and swollen glands. This is not what happens in MS or RA where they become fatigued after overexertion.

The CPET findings give a scientific grounding to what we experience but the important point for PEM is that we do not recover the way other illnesses do.

So our PEM goes beyond post exertional fatigue but includes unique characteristics, is often delayed and is prolonged.

That does not seem so very hard to understand, but the medical profession is still hung up on the stupid idea we have an illness of fatigue thanks to CFS, whereas we have a complex multisystem disease.
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"My first sign I have overdone things is a sore throat and swollen glands."
We're a motley group. I've never had that after doing overdoing thing. I do get various other fun effects.

"stupid idea we have an illness of fatigue thanks to CFS"
The KGB could not have come up with a better diversionary misnaming. Bravo to whomever invented "CFS", they'll reach the Inner Master Level in Dante's hierarchy.
 
Courtney Gunter is the Program Manager for The Jackson Laboratory’s (JAX) myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) Collaborative Research Center (CRC). Her role at JAX CRC includes data analysis and management, coordination between collaborators, and community engagement—like running the ME/CFS blog. Courtney works closely with the Program Director, JAX Professor Derya Unutmaz, M.D., and with the Associate Program Director, JAX Assistant Professor Julia Oh, Ph.D.
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https://www.jax.org/news-and-insights/2019/march/interview-with-courtney-gunter-about-mecfs-outreach
 
About 30 mins long.

Really good discussion. Wise. Seems to summarise the history of ME. Felt quite emotional but that may have been me today.
 
"We previously posted that the JAX ME/CFS CRC project was temporarily put on hold during the beginning of 2020 due to COVID. In August of 2020, we started receiving samples again from subjects in our ME/CFS and healthy control cohorts, and our clinical partners at the Bateman Horne Center have now finished collecting samples from time points 1 and 2, and are working on the last set, the time point 3 samples. To date, we have over 450 blood and stool samples that have been collected across the 3 time points, and will likely have close to 500 samples once we’re done collecting time point 3. In early March 2021, we began our flow cytometry experiments on all of the blood samples we have received to look for differences in the immune cells between people with ME/CFS and healthy controls. We run all time points from the same subject in one experiment so that they can be easily compared to each other. We hope to run all the blood samples through flow cytometry in the next year or so, and analyze all of the data so that we can see the functional differences between healthy controls and people with ME/CFS.

Another exciting development at our Center is that we have very recently received NIH and Institutional Review Board (IRB) approval to begin an additional collaboration with the Bateman Horne Center to collect samples from a new cohort of patients who previously had COVID-19, and have since been experiencing ME/CFS-like symptoms, or “long-COVID.”
....."

https://jaxmecfs.com/2021/04/27/an-update-from-the-jax-me-cfs-center/
 
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